Friends With FOP

Posted by Karen So I missed doing a blog last weekend...  If anyone out there is reading this, and actually cares if I write, my apologies!  Last Sunday, as it happens, Pete and I took Miranda and Owen to Washington State to meet up with Suzanne, her kids and her mother.  The excuse for a get-together was so I could collect the PartyLite candles which I had ordered at Suzanne's September FOP fundraising candle party.   Anyway, we picked Bellingham to meet, since it's roughly halfway between our two cities and also Suzanne's mom lives there. We started out with lunch at Denny's.  Suzanne and ...

posted by Suzanne Our medical insurance is now in effect and Erin has an appointment with her new pediatrician the first week of December.  We all have to change doctors under the new plan but changing Erin's doctor is much more nerve racking.  Most likely this pediatrician has not heard of FOP (Fibrodysplasia Ossificians Progressiva).  It's scary that Alan and I will know more about FOP than her doctor will.  In a way it's kind of silly for my anxiety.  Erin barely saw her last pediatrician but at least he was there for the diagnosis, read the treatment guidelines, and has ...

There are lots of strange and puzzling things about Fibrodysplasia ossificans progressiva.  One of those odd features is that FOP isn't happening all the time, 24 hours per day from a child's birth.  Instead, it waits until a certain point in the child's life, becomes symptomatic and then proceeds after that in fits and starts.  This week, scientists announced a newly reported study which sheds some light on this subject: http://insciences.org/articles.php?user=insciences&tag=Fibrodysplasia%20ossificans%20progressiva  Unsurprisingly, the researchers from the UPenn "FOP Lab" spearheaded the effort, and they collaborated with scientists from Japan and Germany.  The study doesn't explain everything, but is a good start to ...

By Karen Anyone who's been following this blog for a while knows that we try to let Miranda have as normal a life as possible.  If this means doing things that have some degree of risk for a person with Fibrodysplasia Ossificans Progressiva... well, so be it.  It also means that every now and again, fate is going to call our bluff. That happened to us last weekend.  It was my mother-in-law's birthday, and since it was a beautiful day, we were spending a day with the grandparents walking at the Reifel Bird Sanctuary in Delta, BC.   The day started out well.  We ...

By Karen Halloween is a time for all things strange and scary...  It was fitting then (in a twisted, black humour sort of a way) that this past week, leading to the end of October, we had the bizarre and disturbing experience of watching Miranda's bicep swell up to twice it's normal size.  And, believe it or not, the swelling DOESN'T seem to have been connected to Fibrodysplasia Ossificans Progressiva. Let me now back up several steps in telling this story.  As everyone knows, unless you have been living under a rock, there has been much, much concern of late over the ...